Friday, September 27, 2013

Alyona

A quick and free something cool for Alyona. http://www.dukehealth.org/patients_and_visitors/ecard. A friend sent this and I think she'd get a kick out of it. Btw, warren just went to doc. Hoping just for viral and not phenumonia. One of the littles has lung issues. Would not be good for her to be sick. He's going b/c alyona really can not afford to get sick either while recovering. Keep you posted. Should be going home tomorrow evening.

Thursday, September 26, 2013

Surgery results

I have been dating Facebook but thought I'd write  a quick note here as well. My days and nights are blending together so please bear with me.   Duke Childrens Hospital is where surgery was. Surgery day was Wednesday. We were running late and Yana missed the bus. Got here and checked in. Alyona clearly nervous. Staff was amazing. Truly are. Doc came out. Best news ever was not having to go through the bone to fix the cord. They were able to go through a ligament net instead. Much better for healing. Went to recovery. For the second time that day, we heard a doc chew out the nurses. Truly, could have been handled more discreetly. Anyhow, finally got a room only to leave right away to a different room. Warren left to go home.

Nurses tried to get vomiting under control. Took some time. Was a long night. Alyona and I did not sleep at all. Today, we've been on pain management. She has had to lay still and not move for two days. At one point today nurse and I had a scare with her complaining of top chart pain at the base of her skull. Morphine given and team paged. After awhile, figured out it was positioning. Huge relief.

Therapy dog came by tonight and she enjoyed that. She also really enjoyed the gifts today. Friends from warren's work gave her candy. Her and I agreed a piece after every meal till we leave. Thank you Karen and Susan!  Then, alyona got a bouquet of balloons with candy bars!  Also, a gift cert to the gift shop.   Nurse and I are using that as sit up leverage tomorrow. LOL. Thank you so very much Ms. Heather. We've gotten a few calls as well which does help distract her. Room 5329 if you want to call.

Warren brought the littles today. I was so happy to see my babies. Missed them. Unfortunately, they are way too attached to me so both Little One and Houseguest moaned and wailed while calling out for Mom. I'm sure warren had to have been monitored by security at that point. Think about it, two kids crying out for mom at a hospital. They liked seeing alyona and the art lady let them draw pics for  her.

Much more. It's hard to type on this thing. It's very hard being here. On top of things, appears warren is getting sick so energy gone. I haven't slept and neither has he. Hard. Thankful for great friends helping with the girls. If anyone wants to make get well cards for alyona, please feel free. It does help. Recovery will be tough. We'll get there day by day. Much more on lots of stuff. Plan is to come home Saturday. Write more then

Tuesday, September 24, 2013

Neurosurgery tomorrow for Alyona

Can't type long as need to pack for the hospital stay.  Make this quick.  Don't know when I'll be posting again.  Alyona's tethered cord surgery is tomorrow at Duke.  It is a 2 hour surgery.  Need to be there at 7am meaning leaving here around 5:30 or so am.  Shoot me now!  Traffic is killer at that time so that's why the early start.  If there are any neuro trauma patients, we would get bumped and it's an extra few hours.  Hoping not.  After surgery, she will spend 4 days in the hospital.  First two days are completely still flat on her back.  3rd day, Friday, she is to get up to a seated position.  4th day, Saturday she is to stand so that we can go home.  That is the current plan.  Pray it stays that way.  Historically, Alyona has not had luck w/ surgeries.  However, one of the top 9 neurosurgeons in the country is performing hers so we're in good hands.  After a month out, we are to report to ortho to then re-evaluate the scoliosis issue.  That will require a different surgery. 

I will be staying with Alyona at the hospital as Warren stayed with Bojan for the amputation.  3 different friends of mine will be in and out the next few days to help with the kids.  Some generous folks are bringing meals on Thursday, Saturday and Sunday.  That is a huge relief.  Tomorrow, Max will be making hamburgers on the grill.  have the meat thawing now.  Little One should be fine.  We do feel it will be most traumatic and difficult for House guest.  Though Warren will be here, her routine will be off and I will be gone.  The plan is if it gets too hard on her, I will come home and Warren will go back to the hospital with Alyona.  This is also very hard on the other kids as well.  Even with me here last time, it was difficult.  That's why this time I said I'd recruit help.  I knew how hard it was last time.  Right now, it's almost quarter to midnight and Warren is at Walmart trying to get food supplies for the next few days.  We have gone non-stop today.  Pre-op, Bojan's check socket fitting, calls galore to medical places, forgot to order Irina's meds, etc.  Just tons to do.  But, eventually it gets done.  I will post on FB mostly the next few days but try to do a post here.  Thanks for all the well wishes for Alyona. 

Monday, September 23, 2013

Manic Monday

Phew, is that title ever an understatement!  Here's the gist of it all:

  • Alyona gets neurosurgery this week
  • Alyona goes to pre-op on Tuesday
  • social worker comes on Monday for 3 PPR's
  • house is a mess
  • was a lazy weekend
  • kids enjoy AWANAS now
  • Little One had her PPR done
  • need to pick up court papers this week
  • art class is on Tuesday
  • need to order meds
  • medical expenses are stretching my budget LOL
  • Yana turned 18yo yesterday
  • Alyona is nervous
  • sold a few things laying around the house
  • cleared some clutter
  • Max seems to have fixed the dishwasher...wahoo!!!
  • never did make any meals for while I'm gone
  • need to pack for hospital
  • IEP meeting for Logan on Thursday
  • 3 different friends coming to help Warren watch the kids here and there during the day
  • be at the hospital most of this week.  Duke Children's in Durham
  • dreading this surgery for Alyona
  • kids get off early for school on Friday
  • Yana's cross country meet on Wednesday
  • tons going on
  • Little One is doing fine w/ g-tube out
  • I still hate potty training
  • decided that the 3 younger girls can be the Cat in the Hat, Thing 1 & Thing 2 for Halloween
  • making plans for October
  • drop off Nik's eye forms for school
  • Bojan gets the check socket for his new leg on Tuesday
  • Got addicted to Candy Crush.  Curse you!
  • Had a realtor visit yesterday.  Discussing what will happen next.
And way too many other things to name.  Going to be a long week.  i know that.  We'll take it day by day for that's all we can do.  More posts later this evening.  Social worker coming soon.  Played w/ the little ones this morning but need to get Alyona cracking on some school work before she goes into the hospital.  Hey, we have today and we're going to use it.  Want to finish Yana's b-day post for yesterday.  Have a great week everyone.  Ours is going to be a whopper.  Thank goodness all weeks are not the same. 

Sunday, September 22, 2013

Fall Bucket List

You hear of bucket lists all the time.  So, figure we could make one for this fall and see how many we can actually check off that list.  Here's what we came up with.


  • Pick apples from an orchard
  • Go camping
  • Roast marshmallows
  • Go to a pumpkin patch
  • Visit Krispy Kreme
  • Try new fall meal
  • Have a hot cocoa tasting contest
  • Jump in pile of leaves
  • Make fall collage
  • Carve pumpkin
  • Go to a pumpkinchunkin
  • Go to Pullen park
The first 3 we're going to accomplish when we go camping at the end of October.  Now, the last two.  Pullen Park is a really nice park here in Raleigh.  We haven't been for a few years and they rennovated it last year so would love to see it and also take the new ones to it.  I have always, always wanted to go to a Pumkin chunkin contest.  Not sure if they do it everywhere in the US but giant catapults that chunk pumpkins clear across the sky.  I think we'd all get a kick out of that.  I'll pay for it later when mine try to build one in the yard.  I know that already.  But hey, worth it I think.  Just thought we could write these down on some construction paper in the shape of leaves and hang them up for reminders.  Let you know if we actually get some of these accomplished.  Should be fun though.

Budding artist, bug bites, banners and a bath

Been a busy weekend.  Want to do a separate post on Yana turning 18yo today.  Working on it.  For now, a few other things happening around here.  Last week, school called me. 


Okay, this was Nik the night before he went to school.  Ignore the expression b/c he was laughing right before I took this.  His new trick is to make faces before I snap the camera.  See, we had gone to the lake and he played outside the whole day the next day.  All mosquito bites.   Gave him benedryl and put lotion on them.  He woke up, many were quite reduced, some lumps gone.  So, sent him to school.  They call me and tell me he's itching and was not doing work.  Umm, tell him to stop scratching.  See, he & Reni are currently in the same class.  His interpreter brought him up to the office.  They said legally, they can't make me take him home b/c he has no fever.  But, he's not getting work done.  Fine.  My friend ran to go get him b/c I was getting ready to leave to get Little One's g-tube removed.  Literally leaving.  Reni said later "but Mom, he wasn't even itching in class."  Well played school, well played.  I understand he's deaf, FASD, and autistic.  But currently, the school has him placed in regular ed w/ pull outs in resource class, despite my pleas for self-contained.  They said legally(they LOVE this word!), they can't put him in self-contained till all testing is through.  Separate post on that soon too.  I just think this was a day where maybe they didn't want to deal w/ him?  Not sure.  Only going by the fact they sent my son home w/ bug bites, he didn't itch NOT once in the car w/ my friend nor once home.  In addition, Reni said he wasn't itching in class.  And btw, the bites did NOT look like the picture above.  Not by a long shot.  Even the speech therapist that comes to our home said that is just ridiculous.  He didn't itch for her either.  Again, only speculation and can only go by what I'm told.  He laughed the whole time at home.  Said "no school!  No school!"  He tried to itch the next morning and I said I'm NOT picking you up today if you do.  If he could say "aww shucks," he would have. 


Nik's back.  Not as bad as the front.


 Alyona is taking a homeschool art class w/ others every Tuesday here.  Recently, she finished her painting.  I think she do very well.  Alyona did get help w/ this but also did a lot herself as well.  Was very proud of her for attempting something way outside her comfort zone.  I'm going to find a frame for it.  It's 11 X 14.  Looking at the Goodwill this week and a few other places.  If we get the chance this week.  Wood love to have it done for her when she gets back from the hospital. 


This was the finished piece.  Closer look.


Very sweet.  A friend of Alyona named Ally, was sweet to make her this banner for the upcoming surgery.  Alyona really did appreciate it.  She loved it.  Alyona typically has a very hard time with surgeries.  If anyone would like to send her a get well card to read, I'm sure she'd love it.  Give her something to do.  She'll be in the hospital for 4 days.  She is starting to get nervous.  


Yesterday, we decided to stay home.  Relax.  Girls were driving me nuts in the afternoon so I finally said yes, you can go out and play but only on the playground.  Not in the front yard.  We can see out to the back from about anywhere in the house but not so much in the front yard.  Anyhow, I failed to realize the torrential down pour from the night before which turned the sand box into a mud pit.  It did not stop my girls.  Little One above was dirtier in the front but can't show her face quite yet.  Her, Summer and House guest were beyond dirty but had the biggest smiles on their faces.  In the tub they went.  I know my kids love to be outside but some days, a movie watching day would be nice.  Hey, but how often do little kids truly get to make real mud pies?  Not often enough imo.